Life after Traumatic Brain Injury

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I didn’t want to write this, I didn’t have it in me. My brainiversary blog posts are normally fairly upbeat affairs with a nice message and a catchy poem or quote. But in all honesty since July I’ve been feeling anything but jaunty. I didn’t really want to start my next year of recovery on a bum note but here I am.

I then realised that it’s ok to not be ok and it’s even more ok to express that. There are loads of us who are not ok right now. To pretend I’m something that I am most definitely not right now does myself and others a disservice. I’m not entirely sure where this post will end up, so I’m just going to write and see what happens.

The duvet of safety has become my home once more as about 95% of my time since July has been spent underneath it, gestating or incubating or whatever else is boring and still. I’ve got up when I’ve needed to attend something such as my PIP tribunal (which incidentally, I won) but gone straight back to doing my best impression of a plank of wood as soon as I get home. Even the sweet victory at my tribunal got buried underneath the layers of bleurgh that currently hover around my atmosphere.

There are many reasons for the reappearance of my ennui and despair, some that I can put my finger on, others that are hidden within the folds of my temporal lobe (some brain lingo for you there). One of the obvious reasons is that my brain is damaged, mood change 101 right there. Other reasons are the upcoming anniversary that always chirps in, a longer than usual bout of fatigue and a pervasive feeling of stress that is hanging around. There are other reasons that are making me particularly vulnerable due to factors mentioned above. This is stuff that just makes me break inside and feel impotent because I can’t help. When I’m low like this my shell is fragile and I just can’t cope with anything, I know all the advice about worrying about things only within my realm of control but there are times such as now when my faith in myself and humanity goes missing.

I feel so trapped at the moment, trapped by my body that won’t do what I want it to do, trapped by the ignorance and stupidity of others, trapped by society, trapped by the benefit system, trapped, trapped, trapped. There just seems to have been a huge tidal wave of what I will call ‘shite’ that makes my heart hurt. Are you ready for the list of ‘what is currently making Braingirl angry and sad’? Ok, here goes; The selfish actions of farmers in Hurricane Florence territory who despite having 2 weeks warning about the flooding, decided to lock all their animals in cages and leave them to drown in the flood (current estimate is 3.4 million lives) all treated like commodities they can claim on the insurance because we think we own sentient creatures. Hambacher Forest, a 12,000 year old forest in Germany, home to 142 species regarded as important to conservation, casually being torn down right now by a company called RWE for coal mining. The badger cull being rolled out across the UK, where farmers are being offered money to catch and shoot badgers in the head for no concrete scientific reason. Kaporos festival in New York, basically a chicken slaughter festival where thousands of lives are taken and dumped on the streets all in the name of religion. Then finding out 5 species of bird have recently gone extinct in the Amazon due to clearance for animal grazing for an effing beef burger (I’m looking at you MuckDonalds and you can shove your new vegan burger up your golden arches). If this doesn’t make you angry then you’re not paying attention.

This my friends was all in the month of September. This stuff goes on and on and on and yet we still as a society do absolutely nothing (and those that do get the most hideous abuse on social media by people who think ‘bacon tho’ is a clever and intelligent response to a call for compassion). Well I’m fed up mateys, totally fed up. I want to join the Hunt sabs but I can’t, my brain won’t let me, I want to go to protests, but I can’t, my brain won’t let me. I want to liberate animals, but I can’t, my brain won’t let me. All I can do is the moral baseline of being vegan and supporting those that CAN do what I can’t. I can’t be silent anymore. If you’re on Instagram follow @thesavemovement @animalliberationfront @unoffensiveanimal @undergroundbadgersyndicate show them some love and support for being on the frontline.

I massively digressed there but after more than 2 months of inertia and frustration getting that out was very therapeutic! Where do I go from here? I try to reason with myself and give myself that pep talk about feeling what I feel and being kind to myself and all that jazz, so here I am, with you, feeling my feelings. Despite everything I am usually fairly upbeat and progressive, I usually have an inordinate amount of hope in the goodness of humans but right now I want to give everyone a bloody good rattle, WHAT IS WRONG WITH YOU!

I went to my homie (am I too old to say homie?) Rumi for some good talk, here’s what he told me.

How appropriate for just after the Autumn Equinox, dead leaves a-dropping all over the place. I suppose for my 6 year brainiversary it’s time to let the dead leaves drop, time to drop toxic people, toxic mindsets, toxic habits, drop sitting in my own insecurities about how I’m received and if it offends people and start to speak my truth. I need it and my furry, feathered and scaled brethren REALLY need it. Face year 7 in its face, stop stirring your own stew Braingirl and rule your world from your bed if you have to.

P.s. A small candle of good news this month was that I passed my final Horticulture exams with a commendation. All that work was worth it.

This song has been percolating around my noggin for weeks, here, you have it.

Like this:

This is my June post, very late in the month and not what I intended it to be. I had an outline of a script written for a video but I’ve been defeated by fatigue. I wanted to get something out there though so I’m just writing where I’m at today.

I’m fed up today, I’ve been fed up for the past three weeks. I’ve been fatigued for the past three weeks. Minimal activity, days and days of sitting in bed in my pyjamas staring at a screen watching reruns of tv shows that won’t tax my brain. I’ll not lie I’m demotivated, overwhelmed, sad and really really f****d off.

This is the thing with brain injury, initially it defines you completely, you are each other. You lose who you are and become one with the TBI. This then subsides into a more cooperative existence, you know each other are sharing the same space and some of the time can rub along together quite well.

THEN THIS HAPPENS

This descent into fatigue, this life stopping, mood changing and all round annoying aspect of my brain injury. I said on my support group the other day of all the things that my brain injury took, I miss my energy the most. This is true, without energy EVERYTHING becomes difficult. It’s also a time when you realise that to some degree you are still defined by the trauma. What happened to me over three and a half years ago still runs the show, it’s not as strong as it used to be but overnight it can firmly and stubbornly put the brakes on.

There’s been a few triggers; hospital appointments, general busyness and then the current political state of the UK. I don’t want to talk about it too much here but the recent vote in the Uk triggered my Post Traumatic Stress. The feeling of being vulnerable and unsafe combined with the catastrophising on social media and the terrible rise in racist incidents sent my brain into an exhausting and fear filled panic spiral. I can’t stop this happening, it does it all by itself. What I CAN do is accept that’s how I feel right now.

I KNOW it’s part of recovery, I KNOW it will pass, I KNOW it’s for my own good but can I just say right here right now in this moment I hate every stingy, mean, exhausting and boring minute of it. I hate being stuck and trapped, I hate feeling my brain literally shut down after ten minutes of any concentrated effort. I HATE IT, I HATE IT.

There’s a certain expectation to be used to this by now, to just go with the flow. Well, I am used to it but I still hate it. I do go with the flow, but ‘going with the flow’ doesn’t mean denying my anger and frustration. As I sit here with my ears constantly clanging with tinnitus, my eyes leaking and my brain just refusing to connect up, this is TBI nearly 4 years on. This is my reality. This is the time to rage against what’s happened.

So I’m resting, switching off, avoiding social media as much as possible, eating well, drinking water, trying to connect both sides of my brain up and waiting this out.

And then, one morning soon, I’ll wake up and be able to get out of bed. I’ll have energy and joy. I’ll be able to read a book or have a conversation without feeling like my body wants to shut down. I’m telling you this because each subsequent episode of fatigue is a launching pad, it’s the hibernation period before you take off into your next chunk of recovery and this is what’s waiting for me at the end of this tunnel and this is what keeps me going, I hope it keeps you going too.

I’ve never really been one for fashion, clothes have always been functional for me. They keep me warm and allow me to go outside without being arrested. My wardrobe is firmly stuck in the 90’s (think jeans, t shirts, hoodies and converse), I sometimes get yearnings to be a bit more stylish but they usually pass. I have noticed though that since my injury I became even less concerned about how I look. I spent a large part of the past 17 months living in pyjamas, baggy t shirts and slipper socks. Getting dressed was a function of attending appointments and the occasional jaunt to the post office, so as you can imagine I just threw on whatever didn’t smell bad and put a coat on over it.

The more I have swum up to the surface though the more I have realised that it was just another part of my withdrawal from the world. I felt like rubbish and I wanted to hide so why bother thinking too much about my appearance? It didn’t help that my energy was low and my hair was wonky, I didn’t want people to look at me – my transition to bag lady was almost complete. The clothing was just a part of it though, it was more about how I felt about every aspect of my life. I had been wrenched out of my routine, put into freefall and had begun an existence outside of ‘normal’ society. I felt lost in many senses.

I began to question everything, who I was, what purpose I served, where did I go next? how would I slot back into the real world? WILL I slot back into the real world? It’s a very confusing dizzying feeling not knowing who you are, it’s also, much like everything else about this journey, a very scary one. You exist on the outside for so long you begin to wonder if you know how to function anymore. When I am finally ok to work again how on earth will that go? I know I want to do something drastically different but it means retraining and starting again, I am grateful for the refocus that the injury has given me because I always kind of drifted before this, I went through a variety of unsatisfying jobs because that’s what you ‘did’ in the real world. Earning money was put at such high priority that you were considered a bit useless or weird or invaluable if you couldn’t do this. Well I can’t earn money at the moment, I have to rely on the welfare state to eat and pay bills and the current political rhetoric is that this makes me less than human, less than useful. I try to ignore all that though, I am useful and I can continue to be useful in my own way outside of the rat race. In fact I don’t ever really want to step back into it unless it’s on my own terms. No more slogging in a job that makes me miserable just to seem of value to people who I don’t even care about.

It’s not just in employment, it’s other facets of myself. I have had to reassess EVERYTHING. Look at my relationship with others but also with myself. I’m being totally honest here but I didn’t like myself very much. I was sad and lonely, I still am in some ways. I would often use words about myself like ‘useless’ ‘unlovable’ ‘stupid’ ‘worthless’ and that I would never amount to anything. I would do this so frequently that it was an automatic thought and so of course this is how I felt, we all know how thoughts and feelings link.

What happened is that I had the brain injury, the body and soul rocking trauma and this triggered years and years of negative self talk and things I was told as a child by significant adults and being led to believe that feelings are wrong and need to be suppressed and this my dear reader is at the root of my depression and anxiety right now. It’s been easy for me to pin it on health anxiety from the injury and say I’m scared because x happened so I need to have control over my health but it’s this ingrained need for control coupled with my impossibly high standards and me being my toughest critic that has created this perfect storm.

My core beliefs are difficult, ingrained and scary to face, so what am I doing about this?

Firstly, I’m trying to acknowledge that I’m smart and kind and sometimes funny and that I don’t have to make people like me by doing things for them. This is hard for me, my whole self esteem rose and fell on other peoples opinions of my worthiness. When people didn’t return my care or didn’t bother getting to know me properly, it cut me very deeply. I felt it was a slight on my person. Since the injury I’ve been physically unable to run around after everyone else, this has been a HUGE lesson for me, a difficult lesson to suppress my natural urge to people please and I have to see if people like me for…..well…being me.

The answer also lies in the simplest but most difficult thing I’ve ever tried. I’m acknowledging my feelings, I’m trying to FEEL them no matter how tough they are. I’m trying to remove the labels I’ve attached to them for years. Sad isn’t ‘bad’ and happy ‘good’ they are both just feelings. So if I have a sad day or a low day I’m trying to not write the day off as bad, it just ‘is’. I let the feeling be, I say hello to it and then I get on with things. You see when I was giving these things a platform or trying to fight them off because they are ‘bad’, they just clung on harder and overwhelmed me. If you just let them exist within you they go quieter and become a mere grumble. Feelings and thoughts are just that – feelings and thoughts, they cant hurt me. In fact the only thing that’s been hurting me so far is me. I suspect this is true for a lot of us.

I can see you sat there rolling your eyes going ‘yeah right, like I can just do that so easily’ well no, it hasn’t been easy and I still have days where I feel like I can’t cope, where I feel lost and scared but you see there’s that word again- ‘feel’. I get through it, I wake up the next day and start again. I’m not perfect at this but that’s ok, striving for perfection constantly makes us unhappy because not reaching that imagined top of the mountain just feeds the beast (it’s trite and a cliche but who you are IS good enough, I promise).

Make a start, try to acknowledge your feelings without judgement, try to sit still for a while and let your mind and body just drift wherever they need to. I hope this helps you a little.

I think this is the start of acceptance for me but it’s tough clearing out all that baggage, it’s tough to face it and feel it. I’m not saying I’m a zen master, I still cry in the shower but when I cry now more often than not I tell myself it’s ok to cry, it’s good to cry so cry it all out lady.

In the time since I last wrote I’ve grown another year older and experienced another turn on the merry go round of mental health. I have been pondering this post for a few days as there were a few topics I could have written about and seeing as though I’m kind of on an upswing right now it’s often harder to write about the BAD THINGS so I thought I’d look at a subject that has come up many times, not only to myself but a common story heard across the board from TBI survivors. It is ‘things I was/was not told about TBI when leaving hospital’ AKA

Things I was told when I was in hospital

You are in hospital
You have had brain surgery

and erm…… that’s it!

Things I wasn’t told and would love to have known in hospital

What had happened to me
What my operation consisted of
What healing FEELS like (that zaps, tingles, aches, tenderness and tightness are all normal)
That depression will frequently swing you by the ankles to the edges of your mind
Ditto for anxiety
That you WILL grieve and that you should let that happen (crying every day is ok)
That you will experience fatigue like you’ve never experienced before (think batteries out and staring at the wall)
That you will be in and out of your GP like a demented jack in the box convinced you are sick sick sick
That you wont sleep properly and dream for MONTHS
That it may be worthwhile getting a hormone check as your Pituitary gland may go wonky
That you will feel very isolated and lonely
That it takes an inordinate amount of time to heal
That there is a very capable and amazing Brain Injury team you can access via the good old NHS (I found out myself after struggling for months with all of the above)
That you can access Brain Injury Matters for all manner of help

but most importantly that all of this is NORMAL and YOU WILL BE OK eventually (I can’t state this enough!).

This is just my list, there are many people with similar lists, they may be longer or shorter or contain a myriad of other stuff. The thing we all seem to have in common is we knew NONE of this as we embarked on our new journeys. I’m not writing this to scare fellow TBIers, I’m writing this to prepare you. To show you the reality and enable you to get your tool kits ready. I’m lucky to have an awesome and understanding GP who sails through this with me. A great psychologist and assorted others through the Brain Injury Team. My point is, if I had been told even just some of this on release I would have maybe dealt with things easier and they wouldn’t have reached the boiling point they did. I really do think having Brain Injury survivors in hospitals to talk to patients, to put together an essential ‘survival’ leaflet given to people on their way out of hospital would be an enormous help. I know Brain Injury is different for everyone but something just saying you MAY experience these things is useful.

I don’t want this to be just a negative post though because there are positives, like being eternally grateful for the surgeon and the subsequent stream of help via health professionals I’ve had since. But more importantly the lessons, the things that can only come from something like this.

Lesson 1

You reach a stage where it does no good to talk and think about it anymore, this is a good stage, it’s a moving forward stage and it’s a great feeling.

Lesson 2

I learnt just how strong I really am. You get many points where you feel your reserves are gone, the battery is dead and then from nowhere an extra tiny bit of ‘something’ gets released and you get through whatever it is that is making you want to curl up and go away. This is endless and boundless and is your greatest ally. It’s also something I am immensely proud of, strength and courage are not to be underestimated and even when you don’t feel strong and courageous – YOU ARE!

Lesson 3

There are certain things that just don’t matter anymore. They will be different things for different people. But I no longer worry about money or status or careers. They are piffling little insignificances and I feel liberated as a result. I know what I DON’T want anymore.

Lesson 4

Life is ultimately pointless. It really is. Honest.

But the difference between worrying about that and accepting it with a smile is THE most freeing thing I have ever gone through.

The process of recovery from TBI is not a straight line. Its a line that wiggles, zig zags, shoot off round corners and does u turns on occasion. A ‘good’ day in the journey is not a guarantee that tomorrow will be. Yesterday was a horrible day. I was anxious and panicking for most of the day. I had not encountered anxiety for a while so its re-emergence was a unwelcome addition, like a fart in a lift.

Sometimes the anxiety can strike for seemingly no reason and when it hits it’s like “the sky is falling in” as my fellow TBI survivor D put it. Treating anxiety as a part of yourself to try and process it is difficult because your brain is screaming ‘RUN AWAY! RUN AWAY! DANGER!’

Recovery is difficult, it impacts on everything. I have a small business to run, this blog to maintain and appointments to attend as well as my daily battle with my foes. On a day like yesterday where I was completely CONVINCED I was dying it’s difficult to do anything. Socks don’t get packed and posted, blogs go unwritten and the door doesn’t get answered. This is not good for business, customers neither understand nor care that you have been leaping around the house like a jumping bean trying not to die. This leads to questions about maybe giving up the business for a while. Another thing that recovery ‘takes’.

But, and this is the real downer, positive steps in recovery are also scary.

You would think to progress is good news, it’s something to be pleased about. Well yes it is but it *feels* scary. Imagine, you’ve been a certain way for a while (in my case nearly 11 months) you’ve been through this huge trauma, you’ve put coping mechanisms in place for the droopy eyes, the fatigue, the anxiety. Your world became very small and safe and that’s all you deal with for now thank you very much. Then one day your eyes don’t feel droopy anymore or you have a surge of energy or you start dealing with the agoraphobia and Bam! everything becomes scary again. The energy isn’t something to be happy about it’s something ‘different’ that you don’t know how to cope with. The outside world becomes massive and unmanageable, people and places are suddenly the new enemy.

This is when the hard work starts again, you have to adjust your coping mechanisms to incorporate the new things and that kicks off the anxiety and depression again. This will happen with every milestone and it’s exhausting. It’s a side to recovery probably not understood by most because getting better is a good thing right? Well of course it is, but it’s not easy. Nothing is easy on this journey. I wish for a day where it feels like swimming with the tide instead of against it. A day without fear would be a welcome relief.

I’ll be entering my second year of recovery in October. Second year. Being ill for a week is difficult, so imagine 12 months of it. I have days where I feel that I don’t have the energy anymore, it has to end soon. Please. But I wake up every morning and start again because what other choice is there?

Weekends huh? Weekends are supposed to be fun aren’t they? But when you have no discernable ‘week’ then the weekend is just another pair of days that drag into each other.

My weekend has been spent fighting my trio of enemies

Days like this are boring, stupid, exhausting, pointless smelly poo bums.

Days like this make me rage against the world and myself.

As a result I have done nothing of note, this bugs me. It bugs me to my very core. I like doing things. I also like not doing things but it would be nice to have the choice. I think that’s the issue. Having choice taken away is very disempowering, it feeds the cycle of mood, feeling and outcome I have going on. The self fulfilling prophecy that takes up all my thinking time and wont just bloody go away! So this is where Braingirl has to put on her cape and fight, even if it seems to be the same fight over and over again.

I will eventually break the cycle, I will, like a freed battery Hen feel the sunlight on my face once again.

I am sleeping a lot at the moment, one reason being I’m waking too early with the light nights but another being because I’m bloody knackered. All the time.

I used to feel guilty about napping, it’s not encouraged once you’re over 5 and under 70 years old. But I was told by my counsellor to listen to my body and sleep when I needed to. The problem being I’m emotionally and physically wrung out due to the grieving I am doing.

You see, this brain injury thing isn’t that simple. It’s not just a case of being sewn up and sent on your merry way. It’s classed as a ‘traumatic event’ (everyone but me knew this apparently). So I have been going through the perfectly normal process of grieving.

There are different stages of grieving that include denial, anger, depression, bargaining and acceptance. You don’t go through them in a set order and you don’t necessarily experience them all. I’ve done the denial, I did about 6 months of it. I kept saying I was ok and that I could do ‘things’ and be useful and stay up late. It would seem I was wrong. All that did was store up fatigue and stress for the stage I’m in now, anger and depression.

I’m angry that it happened, angry that I’m so tired, angry that it’s changed my life, angry at friends who have bogged off and don’t bother reaching out anymore. You see, to them, I’m better, it was months ago, the surgeon worked his magic and all is fixed. I try to explain that I need support still but it falls on some deaf ears so they’ve been filed away in the useless, selfish category.

I’m also very depressed, hopeless, I feel useless, robbed, trapped. Put these together and you’ve got a hard day right there. Under advice I am now being ‘self-ful’, looking after myself. I need lots of rest and to not set my bar so high.

So I am napping like a mofo at the moment and trying to meditate regularly. But this can bring its own perils. I like napping, I like being comfy in bed watching reruns of favourite shows or films. But it is very seductive is sleep, those 10 mins before I nod off and the 10 minutes after I wake are amazing. I feel relaxed, happy, I’m in no pain, I (and this is the killer) forget that I have a brain injury, I feel like myself again. ‘This is fantastic’ I hear you cry, ‘whatever is wrong with that?’. Well you see it’s what happens after the post nap euphoria has worn off, I freefall back down. Hard.

I hit the bottom like a sack full of spuds. I remember my situation, I feel heavy eyed and anxious and that’s it – day ruined.

The positives I try to glean from all this is that what is happening is ‘normal’. This is reassuring because it means it’s not just me and that there is also lots of evidence that I will come out of it. I just need to let time do its thing. I also have to lower my expectations of how far I can push myself right now. A day where I can complete a few chores is a win and that’s as much as I can hope for right now. The old me is disgusted with this, I used to think I could take on the world on a daily basis so she’s constantly telling me off for being lazy. I have to remind her it’s not lazy, it’s recovery.